Frustrated

[Guest guest]

SueI think the world of Bill and Clinton as well and became outraged at this rigged election. The way they were able to take away everything from from Florida and Michigan in order to have Obama be able to be the winner of the Democratic party who wasn't even on Florida's primary ball.

Yesterday, I filled out and plan to mail an application to change my party to Independant. If is listed on the ticket as VP means nothing to me as I'm planning to write in Clinton as President.

Social Security needs a lot of reform so the people who need it will have it instead of the manner presently run. I'm depressed due to the manner in which I've been treated by social security since 2002 2003, not a drug addict and my health is failing this past year. I was born in the US in Pennsylvania and raised in Florida.

Please take care of yourself.Hugs Love & PrayersetteOn Sun, Jun 8, 2008 at 7:12 AM, Sue <sweetsueohio2002@...> wrote:

Dave, isn't that the truth? You either forgot alcoholic, or your one of the few who that in with drugs (which is exactly what it is). IMHOP, when our last really good President Bill Clinton over hauled welfare, he should have done the same to social security. Unfortuanately the plans were to start over hauling the IRS, and thats when was brought to the front. Just want people to know, that I think the world of Bill and Hillary. I hope Hillaray gets picked to run for VP.

SueDave Fales <matthew_17_20@...> wrote:

but if your a drug addict depressed or an illegal they will just hand it to you that is the wonder of our govt

Re: Re:Frustrated ette and anyone else interested, why not check out my group? The link is down below.

Sueette Limegrover <palime22@...> wrote:

StarI live in Florida and was told yesterday that it still has to go before a Judge despite the latest tests indicating I'm worse. They need to study how bad I was back in 2002 / 2003 before doing anything else. I've been denied twice, had the file suspended, lost reopened and had my Senator assist in reopening the case.

I'm tired of being sick of being morbid obese with people in cars making fun of me, oinking like pigs and making gestures to me. I'm just plain old tired of this. What is the use

anyway?? betterbodybuddies/?yguid=137091429

http://www.peternoone.com.

betterbodybuddies/?yguid=137091429

http://www.peternoone.com.

[Guest guest]

There are a lot of things I also liked about . But I also know she was in the pocket of the lobbyist on Capital Hill - including the big drug companies, big health care plans - that is why initially when Bill was president she was really pushing for the socialized medicine in this country......and then, at the snap of your fingers - she never said another word about it - she got paid off by the big health care companies to stop. This is a fact, not something that is a rumor. But in her defense, most of the people in Washington do the same thing. Same old story, the rich get richer and the middle class or poor take the brunt of everything. I just wish we could get some honest, truly honest politicians. I currently live in IL (only for 7

months), and Obama is a Senator from here. I don't know that much about his record other than what people here have told me - and they say he is a do-nothing Senator....votes NO on most things (that would help people like us) or just doesn't show up to vote. So I don't know what is going to happen. I think we're in trouble no matter who gets elected. They all promise us the moon and then get in office, and suddenly have amnesia!!! Take Care, B. in ILLINOIS Re: Re:Frustratedette and anyone else interested, why not check out my group? The link is down below.Sueette Limegrover <palime22@...> wrote:StarI live in Florida and was told yesterday that it still has to go before a Judge despite the latest tests indicating I'm worse. They need to study how bad I was back in 2002 / 2003 before doing anything else. I've been denied twice, had the file suspended, lost reopened and had my Senator assist in reopening the case.

I'm tired of being sick of being morbid obese with people in cars making fun of me, oinking like pigs and making gestures to me. I'm just plain old tired of this. What is the use

anyway?? betterbodybuddies/?yguid=137091429 http://www.peternoone.com. betterbodybuddies/?yguid=137091429 http://www.peternoone.com.

[Guest guest]

There are a lot of things I also liked about . But I also know she was in the pocket of the lobbyist on Capital Hill - including the big drug companies, big health care plans - that is why initially when Bill was president she was really pushing for the socialized medicine in this country......and then, at the snap of your fingers - she never said another word about it - she got paid off by the big health care companies to stop. This is a fact, not something that is a rumor. But in her defense, most of the people in Washington do the same thing. Same old story, the rich get richer and the middle class or poor take the brunt of everything. I just wish we could get some honest, truly honest politicians. I currently live in IL (only for 7

months), and Obama is a Senator from here. I don't know that much about his record other than what people here have told me - and they say he is a do-nothing Senator....votes NO on most things (that would help people like us) or just doesn't show up to vote. So I don't know what is going to happen. I think we're in trouble no matter who gets elected. They all promise us the moon and then get in office, and suddenly have amnesia!!! Take Care, B. in ILLINOIS Re: Re:Frustratedette and anyone else interested, why not check out my group? The link is down below.Sueette Limegrover <palime22@...> wrote:StarI live in Florida and was told yesterday that it still has to go before a Judge despite the latest tests indicating I'm worse. They need to study how bad I was back in 2002 / 2003 before doing anything else. I've been denied twice, had the file suspended, lost reopened and had my Senator assist in reopening the case.

I'm tired of being sick of being morbid obese with people in cars making fun of me, oinking like pigs and making gestures to me. I'm just plain old tired of this. What is the use

anyway?? betterbodybuddies/?yguid=137091429 http://www.peternoone.com. betterbodybuddies/?yguid=137091429 http://www.peternoone.com.

[Guest guest]

There are a lot of things I also liked about . But I also know she was in the pocket of the lobbyist on Capital Hill - including the big drug companies, big health care plans - that is why initially when Bill was president she was really pushing for the socialized medicine in this country......and then, at the snap of your fingers - she never said another word about it - she got paid off by the big health care companies to stop. This is a fact, not something that is a rumor. But in her defense, most of the people in Washington do the same thing. Same old story, the rich get richer and the middle class or poor take the brunt of everything. I just wish we could get some honest, truly honest politicians. I currently live in IL (only for 7

months), and Obama is a Senator from here. I don't know that much about his record other than what people here have told me - and they say he is a do-nothing Senator....votes NO on most things (that would help people like us) or just doesn't show up to vote. So I don't know what is going to happen. I think we're in trouble no matter who gets elected. They all promise us the moon and then get in office, and suddenly have amnesia!!! Take Care, B. in ILLINOIS Re: Re:Frustratedette and anyone else interested, why not check out my group? The link is down below.Sueette Limegrover <palime22@...> wrote:StarI live in Florida and was told yesterday that it still has to go before a Judge despite the latest tests indicating I'm worse. They need to study how bad I was back in 2002 / 2003 before doing anything else. I've been denied twice, had the file suspended, lost reopened and had my Senator assist in reopening the case.

I'm tired of being sick of being morbid obese with people in cars making fun of me, oinking like pigs and making gestures to me. I'm just plain old tired of this. What is the use

anyway?? betterbodybuddies/?yguid=137091429 http://www.peternoone.com. betterbodybuddies/?yguid=137091429 http://www.peternoone.com.

[Guest guest]

no just forgot alcohol sorry another easy way to get it

Re: Re:Frustrated

ette and anyone else interested, why not check out my group? The link is down below.

Sueette Limegrover <palime22gmail (DOT) com> wrote:

StarI live in Florida and was told yesterday that it still has to go before a Judge despite the latest tests indicating I'm worse. They need to study how bad I was back in 2002 / 2003 before doing anything else. I've been denied twice, had the file suspended, lost reopened and had my Senator assist in reopening the case. I'm tired of being sick of being morbid obese with people in cars making fun of me, oinking like pigs and making gestures to me. I'm just plain old tired of this. What is the use anyway??

http://health. groups.. com/group/ betterbodybuddie s/?yguid= 137091429

http://www.peternoo ne.com.

http://health. groups.. com/group/ betterbodybuddie s/?yguid= 137091429

http://www.peternoo ne.com.

[Guest guest]

no just forgot alcohol sorry another easy way to get it

Re: Re:Frustrated

ette and anyone else interested, why not check out my group? The link is down below.

Sueette Limegrover <palime22gmail (DOT) com> wrote:

StarI live in Florida and was told yesterday that it still has to go before a Judge despite the latest tests indicating I'm worse. They need to study how bad I was back in 2002 / 2003 before doing anything else. I've been denied twice, had the file suspended, lost reopened and had my Senator assist in reopening the case. I'm tired of being sick of being morbid obese with people in cars making fun of me, oinking like pigs and making gestures to me. I'm just plain old tired of this. What is the use anyway??

http://health. groups.. com/group/ betterbodybuddie s/?yguid= 137091429

http://www.peternoo ne.com.

http://health. groups.. com/group/ betterbodybuddie s/?yguid= 137091429

http://www.peternoo ne.com.

[Guest guest]

no just forgot alcohol sorry another easy way to get it

Re: Re:Frustrated

ette and anyone else interested, why not check out my group? The link is down below.

Sueette Limegrover <palime22gmail (DOT) com> wrote:

StarI live in Florida and was told yesterday that it still has to go before a Judge despite the latest tests indicating I'm worse. They need to study how bad I was back in 2002 / 2003 before doing anything else. I've been denied twice, had the file suspended, lost reopened and had my Senator assist in reopening the case. I'm tired of being sick of being morbid obese with people in cars making fun of me, oinking like pigs and making gestures to me. I'm just plain old tired of this. What is the use anyway??

http://health. groups.. com/group/ betterbodybuddie s/?yguid= 137091429

http://www.peternoo ne.com.

http://health. groups.. com/group/ betterbodybuddie s/?yguid= 137091429

http://www.peternoo ne.com.

[Guest guest]

TOTALLY unprofessional behavior! My son has a horrible time with labs. He is 12.

This is due to trauma and needs to be treated as such. You should write a letter

or call the lab administrator and let them know what happened. She was out of

line and should have told you when she was calm that she could not handle it

especially since she had no help. She could have had you come back when there

were more people to help NO EXCUSE!!!!!

BARBIE

frustrated

I felt so frustrated today. I took my three kids in for their monthly

labs. The lab we use only had one person working today. My 10 and 8 yr

olds did beautifully, but my 6 yr old has been upset about the idea of

the " poke " for a few days. I cant say I blame him.....the kid has had

more pokes in his little life than most adults have ever had!!

Anyway, I guess he's decided that enough is enough. He squirmed,

kicked, thrashed, screamed, cried, and generally did whatever he could

do in order to not get his poke. At first, the tech was ok, just

telling him to be quiet, and she'd get done fast. He asked her

repeatedly to do it in his hand(bc thats where he always gets his IV

done) but for whatever reason, she kept telling him NO. She insisted

on it being in his upper arm, and then she told me, I needed to hold

him....she wanted me to hold his two flailing legs, his free arm, AND

his elbow and hand on the arm getting the stick. When that failed, she

raised her voice, and told me if I couldnt do it, I would have to

leave. She ripped off her gloves and Brennans tourniquet, and stomped

off. I wasnt quite sure what to do, so I waited...... she came back a

few minutes later and said we'd try again. So, we did, Brennan was

still hysterical, and wiggly. Again, she raised her voice, basically

yelling at my six yr old for not holding still, ripped off her gloves

and threw them, and told me to take him and leave, and not to come

back unless I had someone with me who was strong enough to hold him

still.

I DID feel somewhat frustrated with my son, but he IS only six yrs

old. But the tech is an adult, and this is her job. I cant believe we

got kicked out of Quest. And why is she there alone? shouldnt there

always be another person to help? what would she do if someone passed

out or otherwise got sick?

Im going to try to get ahold of our ID Dr. tomorrow, and see if he

will order some lidocaine or lmx or something for him. Previously he's

hated Emla.....what he calls " sticky whipped cream! " , but he NEEDS to

get these labs done.

Just a rant, I guess.

valarie

mom to 3 w/cvid

[Guest guest]

" She ripped off her gloves and Brennans tourniquet, and stomped

off. I wasnt quite sure what to do, so I waited...... she came back a

few minutes later and said we'd try again. So, we did, Brennan was

still hysterical, and wiggly. Again, she raised her voice, basically

yelling at my six yr old for not holding still, ripped off her gloves

and threw them, and told me to take him and leave, and not to come

back unless I had someone with me who was strong enough to hold him

still. "

Valarie,

That's terrible behavior on the part of the tech. You have the right to expect

appropriate and compassionate care...or agitate for it. It is our job to shield

our kids from that kind of mistreatment.

According to the American Medical Association's Code of Ethics, you have the

right to courtesy, respect, and dignity. The Code of Ethics of the American

Society for Clinical Laboratory Science also describes that phlebotomists

safeguard the dignity and privacy of patients.

That tech may not have misbehaved if she was being watched by her colleagues.

And, I agree that no health care professional should be flying solo.

Sorry you had to go through that.

Dani's mom, CVID

[Guest guest]

Hi Valarie,

I am so sorry that you and your son had to deal with such a grouchy lab tech

today. We have been there a few times over the last 11 years.

With Maggie it is more of a control issue now at age ll, she cannot control

anything else that is going on in her body so she has the need to be in control

of how things are going to get done. For her it is that SHE needs to count to 3

and She will tell them which vein to use and I am there to make sure they at

least try Her first pick because 99% of the time she is right. She only has one

vein that will work....sometimes.She has a port but we try to save that for

infusions.

When she was much younger, because she had been broke SO many times by lab

Tech's due to her OI (brittle bone disease) she would start to throw a fit

before we even walked into the room. She has had broken arms and legs due to the

ignorance of someone who knew so much more than we did. This was when we decided

to give some of the control back to Maggie in ANY area that we could, what color

coban we were going to use afterwards, SHE would say 1,2,3 and then they could

stick the needle in (and not before) so she had control when the poke was

actually going to happen. Sometimes the anticipation is worse than the poke but

if your son could sense the tension in the person he is supposed to trust

drawing his blood, then I am sure his stress level went way up by that time.

You can request a different tech if the first one is not working for you, we

have also had to do this. It is way too important that your son feels that he

has some say in what is going down. Not IF he will let them draw his blood...but

maybe how or where or when. I know this is frustrating, I can remember wanting

to just grab Maggie and run. I also know that if her doctor would have seen what

was going on for herself.....there would have been one less lab technician in

the lab before the afternoon was over.

Maybe after a good nights rest things will look better tomorrow. You will be

in our thoughts and prayers. Hats off to you for not coming unglued in the lab

in front of your son, maybe would it help to call ahead with an advanced

warning that when you have to come back you would like a tech who is experienced

with chronically ill children, because you will not tolerate this happening

again?

Hugs From Iowa!

Diane and Maggie

> From: osdbmom <osdbmom@...>

> Subject: frustrated

>

> Date: Friday, August 22, 2008, 12:08 AM

> I felt so frustrated today. I took my three kids in for

> their monthly

> labs. The lab we use only had one person working today. My

> 10 and 8 yr

> olds did beautifully, but my 6 yr old has been upset about

> the idea of

> the " poke " for a few days. I cant say I blame

> him.....the kid has had

> more pokes in his little life than most adults have ever

> had!!

> Anyway, I guess he's decided that enough is enough. He

> squirmed,

> kicked, thrashed, screamed, cried, and generally did

> whatever he could

> do in order to not get his poke. At first, the tech was ok,

> just

> telling him to be quiet, and she'd get done fast. He

> asked her

> repeatedly to do it in his hand(bc thats where he always

> gets his IV

> done) but for whatever reason, she kept telling him NO. She

> insisted

> on it being in his upper arm, and then she told me, I

> needed to hold

> him....she wanted me to hold his two flailing legs, his

> free arm, AND

> his elbow and hand on the arm getting the stick. When that

> failed, she

> raised her voice, and told me if I couldnt do it, I would

> have to

> leave. She ripped off her gloves and Brennans tourniquet,

> and stomped

> off. I wasnt quite sure what to do, so I waited......she

> came back a

> few minutes later and said we'd try again. So, we did,

> Brennan was

> still hysterical, and wiggly. Again, she raised her voice,

> basically

> yelling at my six yr old for not holding still, ripped off

> her gloves

> and threw them, and told me to take him and leave, and not

> to come

> back unless I had someone with me who was strong enough to

> hold him

> still.

> I DID feel somewhat frustrated with my son, but he IS only

> six yrs

> old. But the tech is an adult, and this is her job. I cant

> believe we

> got kicked out of Quest. And why is she there alone?

> shouldnt there

> always be another person to help? what would she do if

> someone passed

> out or otherwise got sick?

> Im going to try to get ahold of our ID Dr. tomorrow, and

> see if he

> will order some lidocaine or lmx or something for him.

> Previously he's

> hated Emla.....what he calls " sticky whipped

> cream! " , but he NEEDS to

> get these labs done.

> Just a rant, I guess.

>

> valarie

> mom to 3 w/cvid

[Guest guest]

We went through this with Blake last week...he is 16.

It had been 6 months since any IV sticks. But he still refused, got a little

physical & then told the nurse she could only stick where he told her to.

Blake's homehealth nurse is small statured, so I was in fear for her, but Blake

clamed down just as she was about to stick. She did try right where he told her

to. First one arm then the other. Finally he gave in & let her stick his inside

right wrist. I know this is a horrible place to be stuck, but Blake says it

doesn't hurt....I KNOW first hand it does...especially if they are going in to

the arterial vein!!!!

I an tell you, even at 16 the child has to have some control over " some " of his

medical treatment. I feel he has been through sooooo much in just his 16 yrs,

that I still get teary eyed when he has to be stuck.

I know it is alot of frustration to see some one else be sooo harsh with your

child & not know what todo....but...it is your right to complain & ask to not

have that tech again. I know you never know when there will one or even 3 folks

there, but how does she know if her other techs are " strong " enough to hold the

tiger by the tail especially when HE knows what is gonna happen ahead of

time....

I can tell Blake a week before time for the test...he blocks it out & when time

arrives he will act like I never told him about it... " What....You dis not tell

me she was coming?! "

 

Can you get a Home Health nurse that come come for blood draws, one that can

become familiar witht he children & they can get comfortabel with. This way when

it is time ti " stick " they will be prepared & know that the nurse will try to do

just what they want done?  We have a nurse who comes every 2 weeks to do vitals

& check up on blake...mostly to keep him from needing to go to the hospital for

these sticks & staying out of the Dr. office & getting sicker. will

even call to get perscription refills & give the Dr. a heads up if he is under

the weather. Doing it this way, keeps him well & allows me peace of mind that

someone is coming to do this. Our insurance has approved this for Blake(I think

just so they don't have to pay the expensive bill of being in a hospital every

other week!!!!!

Just an idea

Good Luck!!!

Hang in there

mom to Blake 16

SCID, SDBS, Asthma, Asperger's Syndrome(Autism)/ADHD/OCD/ODD GERD,Intergrated

Sensory Motor Skills delays,

The Greatest Adventure of MY Lifetime

http://www3.caringbridge.org/sc/blakester

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

From: osdbmom <osdbmom@...>

Subject: frustrated

Date: Thursday, August 21, 2008, 8:08 PM

I felt so frustrated today. I took my three kids in for their monthly

labs. The lab we use only had one person working today. My 10 and 8 yr

olds did beautifully, but my 6 yr old has been upset about the idea of

the " poke " for a few days. I cant say I blame him.....the kid has had

more pokes in his little life than most adults have ever had!!

Anyway, I guess he's decided that enough is enough. He squirmed,

kicked, thrashed, screamed, cried, and generally did whatever he could

do in order to not get his poke. At first, the tech was ok, just

telling him to be quiet, and she'd get done fast. He asked her

repeatedly to do it in his hand(bc thats where he always gets his IV

done) but for whatever reason, she kept telling him NO. She insisted

on it being in his upper arm, and then she told me, I needed to hold

him....she wanted me to hold his two flailing legs, his free arm, AND

his elbow and hand on the arm getting the stick. When that failed, she

raised her voice, and told me if I couldnt do it, I would have to

leave. She ripped off her gloves and Brennans tourniquet, and stomped

off. I wasnt quite sure what to do, so I waited...... she came back a

few minutes later and said we'd try again. So, we did, Brennan was

still hysterical, and wiggly. Again, she raised her voice, basically

yelling at my six yr old for not holding still, ripped off her gloves

and threw them, and told me to take him and leave, and not to come

back unless I had someone with me who was strong enough to hold him

still.

I DID feel somewhat frustrated with my son, but he IS only six yrs

old. But the tech is an adult, and this is her job. I cant believe we

got kicked out of Quest. And why is she there alone? shouldnt there

always be another person to help? what would she do if someone passed

out or otherwise got sick?

Im going to try to get ahold of our ID Dr. tomorrow, and see if he

will order some lidocaine or lmx or something for him. Previously he's

hated Emla.....what he calls " sticky whipped cream! " , but he NEEDS to

get these labs done.

Just a rant, I guess.

valarie

mom to 3 w/cvid

[Guest guest]

, your poor son. Bad enough that he felt scared, overwhelmed

and probably shame for crying, but to have a lab tech lose it on him

is reprehensible.

If it were me, I would contact the lab today and explained what

happened yesterday. I would also explain that your son is

chronically ill, gets IV's monthly and countless sticks. He has a

very good reason for acting like a normal six year old. The lab tech

does not have a good reason for acting like a six year old. I like

the suggestion of calling ahead before you go to make sure there are

more than one there, and someone experienced with kids.

The bad side, of course, is now it's going to be even more difficult

for him because he not only has his understandable fears, but he has

new ones as well. For that reason alone, I would call the lab

supervisor. This shouldn't happen to another child. I would suggest

the next time he goes to the lab, schedule something fun right after,

like a happy meal at Mickey D's or playtime at the park. And bring

your husband, if possible. I have found that if we double-team the

techs, we tend to get a little more respect.

I'm sorry you went through this. It's bad enough we've all been

through " med school " but to be treated that way...I would be burning

up. I really think you should contact the lab supervisor and

respectfully tell them what happened. It's inexcusable.

Best wishes,

mom to Mark 7 CVID

>

> I felt so frustrated today. I took my three kids in for their

monthly

> labs. The lab we use only had one person working today. My 10 and 8

yr

> olds did beautifully, but my 6 yr old has been upset about the idea

of

> the " poke " for a few days. I cant say I blame him.....the kid has

had

> more pokes in his little life than most adults have ever had!!

> Anyway, I guess he's decided that enough is enough. He squirmed,

> kicked, thrashed, screamed, cried, and generally did whatever he

could

> do in order to not get his poke. At first, the tech was ok, just

> telling him to be quiet, and she'd get done fast. He asked her

> repeatedly to do it in his hand(bc thats where he always gets his IV

> done) but for whatever reason, she kept telling him NO. She insisted

> on it being in his upper arm, and then she told me, I needed to hold

> him....she wanted me to hold his two flailing legs, his free arm,

AND

> his elbow and hand on the arm getting the stick. When that failed,

she

> raised her voice, and told me if I couldnt do it, I would have to

> leave. She ripped off her gloves and Brennans tourniquet, and

stomped

> off. I wasnt quite sure what to do, so I waited......she came back a

> few minutes later and said we'd try again. So, we did, Brennan was

> still hysterical, and wiggly. Again, she raised her voice, basically

> yelling at my six yr old for not holding still, ripped off her

gloves

> and threw them, and told me to take him and leave, and not to come

> back unless I had someone with me who was strong enough to hold him

> still.

> I DID feel somewhat frustrated with my son, but he IS only six yrs

> old. But the tech is an adult, and this is her job. I cant believe

we

> got kicked out of Quest. And why is she there alone? shouldnt there

> always be another person to help? what would she do if someone

passed

> out or otherwise got sick?

> Im going to try to get ahold of our ID Dr. tomorrow, and see if he

> will order some lidocaine or lmx or something for him. Previously

he's

> hated Emla.....what he calls " sticky whipped cream! " , but he NEEDS

to

> get these labs done.

> Just a rant, I guess.

>

> valarie

> mom to 3 w/cvid

>

[Guest guest]

valarie

so sorry that happened, my allie is 6 and yesterday was her ivig day

and it took us a few min's to let her feel in control, and she takes

our her iv every time and it helps her feel in control. i too have

had to make a complant with our lab, and now when its time for more

labs i call and tell them we're comming and tell them if they never

have done a poke on her before what she has been though, and so far

i have not had any trouble.

best of luck

dovie

allie 6

hypogamma, other health issues

>

> I felt so frustrated today. I took my three kids in for their

monthly

> labs. The lab we use only had one person working today. My 10 and 8

yr

> olds did beautifully, but my 6 yr old has been upset about the idea

of

> the " poke " for a few days. I cant say I blame him.....the kid has

had

> more pokes in his little life than most adults have ever had!!

> Anyway, I guess he's decided that enough is enough. He squirmed,

> kicked, thrashed, screamed, cried, and generally did whatever he

could

> do in order to not get his poke. At first, the tech was ok, just

> telling him to be quiet, and she'd get done fast. He asked her

> repeatedly to do it in his hand(bc thats where he always gets his IV

> done) but for whatever reason, she kept telling him NO. She insisted

> on it being in his upper arm, and then she told me, I needed to hold

> him....she wanted me to hold his two flailing legs, his free arm,

AND

> his elbow and hand on the arm getting the stick. When that failed,

she

> raised her voice, and told me if I couldnt do it, I would have to

> leave. She ripped off her gloves and Brennans tourniquet, and

stomped

> off. I wasnt quite sure what to do, so I waited......she came back a

> few minutes later and said we'd try again. So, we did, Brennan was

> still hysterical, and wiggly. Again, she raised her voice, basically

> yelling at my six yr old for not holding still, ripped off her

gloves

> and threw them, and told me to take him and leave, and not to come

> back unless I had someone with me who was strong enough to hold him

> still.

> I DID feel somewhat frustrated with my son, but he IS only six yrs

> old. But the tech is an adult, and this is her job. I cant believe

we

> got kicked out of Quest. And why is she there alone? shouldnt there

> always be another person to help? what would she do if someone

passed

> out or otherwise got sick?

> Im going to try to get ahold of our ID Dr. tomorrow, and see if he

> will order some lidocaine or lmx or something for him. Previously

he's

> hated Emla.....what he calls " sticky whipped cream! " , but he NEEDS

to

> get these labs done.

> Just a rant, I guess.

>

> valarie

> mom to 3 w/cvid

>

[Guest guest]

Hi Valarie,

Just wanted to add my outrage to everyone else's. I am so sorry that you and

your son were treated so badly. If he has a problem with the EMLA/LMX, you

might ask you doctor if he can prescribe the Lidocaine patches instead.... I

posted the info on them last week and they have been great for my 3 year old who

can't handle the slimy creams due to his sensory issues. , mom to 3 with

CVID: (9), (6), Matty (3) http://www.teamhope.info.com/

http://foxfamilypidd.bravehost.com/

EMAILING FOR THE GREATER GOODJoin me

[Guest guest]

Hi Valarie,

We had a period where my son (then 12) was under severe stress (moving cross

country among other things) and was having panic attacks at his sub-q

treatments. His body was just on overload after so many sticks.

Anyway, I saw a psychiatrist and explained the situation. She gave me Ativan

(I think) and we medicated him before his treatments. Nobody else would do

this. The immunologist suggested benedryl. She heard the story and said it

was " cruel and inhumane " what he'd been put through. " It only took two or

three times with the Ativan and he was back on track. Something to think

about. I think these poor kids have just had enough sometimes, regardless of

how good or terrible the techs are.

Sue in NY

On Fri, Aug 22, 2008 at 5:03 PM, Fox <mfox50@...> wrote:

> Hi Valarie,

>

> Just wanted to add my outrage to everyone else's. I am so sorry that you

> and your son were treated so badly. If he has a problem with the EMLA/LMX,

> you might ask you doctor if he can prescribe the Lidocaine patches

> instead.... I posted the info on them last week and they have been great for

> my 3 year old who can't handle the slimy creams due to his sensory issues.

> , mom to 3 with CVID: (9), (6), Matty (3)

> http://www.teamhope.info.com/

> http://foxfamilypidd.bravehost.com/

>

> EMAILING FOR THE GREATER GOODJoin me

>

>

[Guest guest]

---

I have decided to not return to this lab. Ill just drive farther and

try to get better service. Most labs we do at our hospital, actually,

we just do them when we are doing IVIG, so its so much easier that

way. I guess Im not used to the little labs anymore.

My question is this. This particular Quest lab has only two techs, who

work together, unless its only one there on a given day, like what

happened with us. In that case.......where do I find the lab

supervisor? or admin? Im not sure who Im making a complaint with?

There isnt a " person in charge " at that particular lab.

valarie

In , Barbara Jimenez <mother5590@...> wrote:

>

> TOTALLY unprofessional behavior! My son has a horrible time with

labs. He is 12. This is due to trauma and needs to be treated as such.

You should write a letter or call the lab administrator and let them

know what happened. She was out of line and should have told you when

she was calm that she could not handle it especially since she had no

help. She could have had you come back when there were more people to

help NO EXCUSE!!!!!

>

> BARBIE

>

>

>

> frustrated

>

>

> I felt so frustrated today. I took my three kids in for their monthly

> labs. The lab we use only had one person working today. My 10 and 8 yr

> olds did beautifully, but my 6 yr old has been upset about the idea of

> the " poke " for a few days. I cant say I blame him.....the kid has had

> more pokes in his little life than most adults have ever had!!

> Anyway, I guess he's decided that enough is enough. He squirmed,

> kicked, thrashed, screamed, cried, and generally did whatever he could

> do in order to not get his poke. At first, the tech was ok, just

> telling him to be quiet, and she'd get done fast. He asked her

> repeatedly to do it in his hand(bc thats where he always gets his IV

> done) but for whatever reason, she kept telling him NO. She insisted

> on it being in his upper arm, and then she told me, I needed to hold

> him....she wanted me to hold his two flailing legs, his free arm, AND

> his elbow and hand on the arm getting the stick. When that failed, she

> raised her voice, and told me if I couldnt do it, I would have to

> leave. She ripped off her gloves and Brennans tourniquet, and stomped

> off. I wasnt quite sure what to do, so I waited...... she came back a

> few minutes later and said we'd try again. So, we did, Brennan was

> still hysterical, and wiggly. Again, she raised her voice, basically

> yelling at my six yr old for not holding still, ripped off her gloves

> and threw them, and told me to take him and leave, and not to come

> back unless I had someone with me who was strong enough to hold him

> still.

> I DID feel somewhat frustrated with my son, but he IS only six yrs

> old. But the tech is an adult, and this is her job. I cant believe we

> got kicked out of Quest. And why is she there alone? shouldnt there

> always be another person to help? what would she do if someone passed

> out or otherwise got sick?

> Im going to try to get ahold of our ID Dr. tomorrow, and see if he

> will order some lidocaine or lmx or something for him. Previously he's

> hated Emla.....what he calls " sticky whipped cream! " , but he NEEDS to

> get these labs done.

> Just a rant, I guess.

>

> valarie

> mom to 3 w/cvid

>

>

>

>

>

>

>

[Guest guest]

,

I would make the same choice about changing labs. Can you ask your

peds (or immuno, whoever ordered the labs) about your experience to

see if they can identify who is actually responsible for the lab

(someone has to be in charge, right??!) and then send a letter or a

phone call. I seriously would address this, and not let it go. If

it happened to your son, it will happen to someone else's child. As

horrible as it is for us parents to see something like that unfold,

it can cause a life-time phobia for the kids. And we all know our

kids can't develop a phobia to labs!

Best wishes,

mom to Mark 7 CVID

> >

> > TOTALLY unprofessional behavior! My son has a horrible time with

> labs. He is 12. This is due to trauma and needs to be treated as

such.

> You should write a letter or call the lab administrator and let them

> know what happened. She was out of line and should have told you

when

> she was calm that she could not handle it especially since she had

no

> help. She could have had you come back when there were more people

to

> help NO EXCUSE!!!!!

> >

> > BARBIE

> >

> >

> >

> > frustrated

> >

> >

> > I felt so frustrated today. I took my three kids in for their

monthly

> > labs. The lab we use only had one person working today. My 10 and

8 yr

> > olds did beautifully, but my 6 yr old has been upset about the

idea of

> > the " poke " for a few days. I cant say I blame him.....the kid has

had

> > more pokes in his little life than most adults have ever had!!

> > Anyway, I guess he's decided that enough is enough. He squirmed,

> > kicked, thrashed, screamed, cried, and generally did whatever he

could

> > do in order to not get his poke. At first, the tech was ok, just

> > telling him to be quiet, and she'd get done fast. He asked her

> > repeatedly to do it in his hand(bc thats where he always gets his

IV

> > done) but for whatever reason, she kept telling him NO. She

insisted

> > on it being in his upper arm, and then she told me, I needed to

hold

> > him....she wanted me to hold his two flailing legs, his free arm,

AND

> > his elbow and hand on the arm getting the stick. When that

failed, she

> > raised her voice, and told me if I couldnt do it, I would have to

> > leave. She ripped off her gloves and Brennans tourniquet, and

stomped

> > off. I wasnt quite sure what to do, so I waited...... she came

back a

> > few minutes later and said we'd try again. So, we did, Brennan was

> > still hysterical, and wiggly. Again, she raised her voice,

basically

> > yelling at my six yr old for not holding still, ripped off her

gloves

> > and threw them, and told me to take him and leave, and not to come

> > back unless I had someone with me who was strong enough to hold

him

> > still.

> > I DID feel somewhat frustrated with my son, but he IS only six yrs

> > old. But the tech is an adult, and this is her job. I cant

believe we

> > got kicked out of Quest. And why is she there alone? shouldnt

there

> > always be another person to help? what would she do if someone

passed

> > out or otherwise got sick?

> > Im going to try to get ahold of our ID Dr. tomorrow, and see if he

> > will order some lidocaine or lmx or something for him. Previously

he's

> > hated Emla.....what he calls " sticky whipped cream! " , but he

NEEDS to

> > get these labs done.

> > Just a rant, I guess.

> >

> > valarie

> > mom to 3 w/cvid

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I feel for you- maybe you want to send a video of your child in pain to the

insurance company so they can see how hard this is for your child and your

family---makes me so made that insurance companines rule the world---My daughter

went thru a long couple of years of belly pain--doc's could never pin point it-

one time she came back postive for h/pylori- so they treated that-then they

would tell us it was reflux-then would tell us that her stool was stuck in her

bowels- we tried lots of different things---finally after about 2 years things

seemed to get better on their own- not sure why or how-- but hang in there---

hope the doc's will get to the bottom of this and that your insurance will give

the meds to your child that he needs to help stop the pain.

Sue

mom to w cvid

From: kneesme <karenel@...>

Subject: FRUSTRATED

Date: Wednesday, November 12, 2008, 6:30 PM

I need some input…I feel like we`re spinning our wheels with this belly

pain. Trevor has been diagnosed with gastroparesis, severe bacterial

overgrowth, has a fundo and g- tube, and cvid. He just had an endoscopy

and colonoscopy. The endoscopy showed the wrap was still wrapped, but

not as tight as she'd like it. The colonoscopy showed focal acute

cryptitis and a crypt abscess. GI wasn't to concerned about the

cystitis, she assumed it's from the clean out. After looking at the

slides again the consensus is the crypt abscess is " not significant " .

Then why mention it? I was hoping it gave us an answer to his belly

pain. He eats next to nothing, and doesn't tolerate g- tube feeds

because of pain. He rolls in pain daily along with long bouts of

retching. She put him on zofran every eight hours ,which took the edge

off, and of course the insurance company won't approve it, even with a

pre-auth.

Does anyone have these issues or some answers? GI is trying to get to

the bottom of it, but I'm ready to loose it watching him in so much

pain.

[Guest guest]

Macey just had similar findings on her colonoscopy. acute colitis with

cryptitis. it's supposedly the reason she's been having so much diarrhea. They

said though it couldn't account for the epigastric pain. Taking her gallbladder

today hopefully might help with that. Do you think the problem is in his

stomach or his colon? Either way there is a blood test you can do to see if he

has an inflammatory bowel disease. Macey's having that drawn in the morning.

They said it would be a consideration based on the pathology of the colonoscopy.

She also has Zofran prescribed PRN and Lortab for pain. Also we're using Elavil

before bed, Lomotil in the morning and before bed and Levsin (antispasmodic) in

the morning.

Ursula - mom to (16) and Macey (13,CVID)

[Guest guest]

You need to get the DR to call the insurance and insist that they approve it.

Otherwise they can admit him and it will cost them LOTS more. I am so sorry for

what you are going through. Your family in in my prayers.

BARBIE

________________________________

From: kneesme <karenel@...>

Sent: Wednesday, November 12, 2008 6:30:13 PM

Subject: FRUSTRATED

I need some input…I feel like we`re spinning our wheels with this belly

pain. Trevor has been diagnosed with gastroparesis, severe bacterial

overgrowth, has a fundo and g- tube, and cvid. He just had an endoscopy

and colonoscopy. The endoscopy showed the wrap was still wrapped, but

not as tight as she'd like it. The colonoscopy showed focal acute

cryptitis and a crypt abscess. GI wasn't to concerned about the

cystitis, she assumed it's from the clean out. After looking at the

slides again the consensus is the crypt abscess is " not significant " .

Then why mention it? I was hoping it gave us an answer to his belly

pain. He eats next to nothing, and doesn't tolerate g- tube feeds

because of pain. He rolls in pain daily along with long bouts of

retching. She put him on zofran every eight hours ,which took the edge

off, and of course the insurance company won't approve it, even with a

pre-auth.

Does anyone have these issues or some answers? GI is trying to get to

the bottom of it, but I'm ready to loose it watching him in so much

pain.

[Guest guest]

The dr has called the insurance co. They still denied it. She's got a

call in to the medical director. Hopefully she'll have some luck. He

is miserable

>

> You need to get the DR to call the insurance and insist that they

approve it. Otherwise they can admit him and it will cost them LOTS

more. I am so sorry for what you are going through. Your family in in

my prayers.

>

> BARBIE

>

>

>

>

> ________________________________

> From: kneesme <karenel@...>

>

> Sent: Wednesday, November 12, 2008 6:30:13 PM

> Subject: FRUSTRATED

>

>

> I need some input…I feel like we`re spinning our wheels with this

belly

> pain. Trevor has been diagnosed with gastroparesis, severe

bacterial

> overgrowth, has a fundo and g- tube, and cvid. He just had an

endoscopy

> and colonoscopy. The endoscopy showed the wrap was still wrapped,

but

> not as tight as she'd like it. The colonoscopy showed focal acute

> cryptitis and a crypt abscess. GI wasn't to concerned about the

> cystitis, she assumed it's from the clean out. After looking at the

> slides again the consensus is the crypt abscess is " not

significant " .

> Then why mention it? I was hoping it gave us an answer to his belly

> pain. He eats next to nothing, and doesn't tolerate g- tube feeds

> because of pain. He rolls in pain daily along with long bouts of

> retching. She put him on zofran every eight hours ,which took the

edge

> off, and of course the insurance company won't approve it, even

with a

> pre-auth.

> Does anyone have these issues or some answers? GI is trying to get

to

> the bottom of it, but I'm ready to loose it watching him in so much

> pain.

>

>

>

>

[Guest guest]

I'm sorry I can't help, , but I'm sending prayers and hugs from here!

Mom to , 6 - GSD, CVID, central respiratory failure

Meredith, 3 - GSD, CVID, central respiratory failure

, 9 - healthy

Carmel, IN

www.caringbridge.org/visit/mhobbs

From: [mailto: ] On Behalf Of

kneesme

Sent: Wednesday, November 12, 2008 7:30 PM

Subject: FRUSTRATED

I need some input.I feel like we`re spinning our wheels with this belly

pain. Trevor has been diagnosed with gastroparesis, severe bacterial

overgrowth, has a fundo and g- tube, and cvid. He just had an endoscopy

and colonoscopy. The endoscopy showed the wrap was still wrapped, but

not as tight as she'd like it. The colonoscopy showed focal acute

cryptitis and a crypt abscess. GI wasn't to concerned about the

cystitis, she assumed it's from the clean out. After looking at the

slides again the consensus is the crypt abscess is " not significant " .

Then why mention it? I was hoping it gave us an answer to his belly

pain. He eats next to nothing, and doesn't tolerate g- tube feeds

because of pain. He rolls in pain daily along with long bouts of

retching. She put him on zofran every eight hours ,which took the edge

off, and of course the insurance company won't approve it, even with a

pre-auth.

Does anyone have these issues or some answers? GI is trying to get to

the bottom of it, but I'm ready to loose it watching him in so much

pain.

[Guest guest]

Hi Amy - I would be frustrated if I were you too. So you are saying that since

the rheumy didn't find inflammation in her wrist that he thinks she should go

off the enbrel, even though she is still in all that pain? It certainly

wouldn't hurt to get a 2nd opinion. There may be some others in the group that

could help you out with finding another ped rheumy. If you live in MN we go to

an awesome one.

& Grant (12, Psa/Uveitis)

>

> We went and saw the rheumy yesterday. Lucy has been on Enbrel for 4 weeks now

and he says that all of the swelling in her wrist is gone. That's the good

news. The reason I am frustrated is because he said that he wants to take her

off of the Enbrel in a few months and see if she goes into remission. This sets

off a major warning signal to me. He said that since only one joint is

affected, she is more likely to go into remission. I have told him that her

fingers hurt too bad to make it through a day of writing at school. I showed

him the pictures of her swollen, red hands, and he said it was a vascular

reaction. I have told him that she can't make it through a Wal-Mart trip

because her ankles hurt too bad. She gets up in the mornings, and not every

morning, but more often than not, she feels like every joint in her body hurts.

Her jaw hurts to chew. Her neck and back hurts.

>

> I feel like he is not listening to me. My uncle's grandaughter has jra and he

said that they gave up on this particular doctor because they didn't have any

confidence in him. But he's supposed to be the local expert. I am just so

frustrated.

>

> Amy and Lucy, 7, poly (I think)

>

[Guest guest]

This rheumy is supposed to be really good and I think that may be part of the

problem. He is very personable, but he is so busy that when you go see him, you

wait and then you see a nurse and you tell her all the details about your child.

Then he comes in for 5 minutes and looks at your child. Yesterday I told the

nurse that she was having pain in her ankles and fingers and neck and jaw, but I

don't think any of this was relayed to him. That, or even worse, he wasn't

listening. Either way, he seems too busy to hear me. I'm thinking about making

an appointment with one of the other rheumy's at the practice. I think there

are 3.

Amy

> >

> > We went and saw the rheumy yesterday. Lucy has been on Enbrel for 4 weeks

now and he says that all of the swelling in her wrist is gone. That's the good

news. The reason I am frustrated is because he said that he wants to take her

off of the Enbrel in a few months and see if she goes into remission. This sets

off a major warning signal to me. He said that since only one joint is

affected, she is more likely to go into remission. I have told him that her

fingers hurt too bad to make it through a day of writing at school. I showed

him the pictures of her swollen, red hands, and he said it was a vascular

reaction. I have told him that she can't make it through a Wal-Mart trip

because her ankles hurt too bad. She gets up in the mornings, and not every

morning, but more often than not, she feels like every joint in her body hurts.

Her jaw hurts to chew. Her neck and back hurts.

> >

> > I feel like he is not listening to me. My uncle's grandaughter has jra and

he said that they gave up on this particular doctor because they didn't have any

confidence in him. But he's supposed to be the local expert. I am just so

frustrated.

> >

> > Amy and Lucy, 7, poly (I think)

> >

>

[Guest guest]

Our rheumy spends as much time as we need with him. We always fill out a

questionnaire on how Grant is feeling while we are waiting. Then during the

appt. the rheumy goes through it all with us. After that, the rheumy checks

every joint in Grants body for inflammation and then we discuss what he found.

We are usually with the rheumy for 30 minutes or more. That would be a good

idea to try another rheumy at that practice.

& Grant (12, PsA/Uveitis)

> > >

> > > We went and saw the rheumy yesterday. Lucy has been on Enbrel for 4 weeks

now and he says that all of the swelling in her wrist is gone. That's the good

news. The reason I am frustrated is because he said that he wants to take her

off of the Enbrel in a few months and see if she goes into remission. This sets

off a major warning signal to me. He said that since only one joint is

affected, she is more likely to go into remission. I have told him that her

fingers hurt too bad to make it through a day of writing at school. I showed

him the pictures of her swollen, red hands, and he said it was a vascular

reaction. I have told him that she can't make it through a Wal-Mart trip

because her ankles hurt too bad. She gets up in the mornings, and not every

morning, but more often than not, she feels like every joint in her body hurts.

Her jaw hurts to chew. Her neck and back hurts.

> > >

> > > I feel like he is not listening to me. My uncle's grandaughter has jra

and he said that they gave up on this particular doctor because they didn't have

any confidence in him. But he's supposed to be the local expert. I am just so

frustrated.

> > >

> > > Amy and Lucy, 7, poly (I think)

> > >

> >

>